I guess I've been lucky - my PCP has been an unwilling participant in the opioid prescription business for 3 years. That's 3 years longer than I had before.

Today, she fired me.

I've spent 4 months trying to find a script that works, finally found one that seems to do the least damage to me, and she's decided it's too much to take and she won't write anymore. Worried about her license, she says. Not worried about me, but her license. Two days ago when she freaked out about the dose I needed of the Dilaudid (which is in the range suggested in both RLS books I have), I'd suggested she call Dr B and talk to him since she agreed to work with him. Guess she decided not to do that.

Normally, I'd call Dr B, who is my RLS doc, and have him write a script, then would FedEx it to me. But, he's out of town, so his staff won't writ the script because he's not written it before, only my PCP had (on his instructions). To add to it all, I'm leaving in the morning for a conference...a business conference where I'm presenting and meeting clients. And without any medication that works. Can't wait to see how I manage to put two intelligent words together.

I have leftover meds that haven't worked. Maybe I can take the one that gives me migraine headaches. Or maybe the one that makes me sleepy and non-functional all day. Won't that be great. Not.

I am furious with her. When she told me she wasn't willing, I explained that I'd be out of town for a week and because she normally only writes the scripts when the prior one runs out, I had no medication to take with me. I asked, would she be willing to write one week's worth.

Nope. Not willing.

I always knew this day might come. It took me a long time to find someone to help and I've always known she hates writing these scripts. And, at least I have Dr B most of the time. Just not today, when I need it.

Why are some things so flippin hard? I think I'll go cry for awhile. Then, I'm going to be really mad and write a letter to someone about her. Not sure who cares, but at least I'll feel better blasting her!

Do you mean that you literally have no PCP, or is it that you have a PCP who isn't willing to write the scripts for the opiates. What does PCP doc expect you to do in the immediate few days ???? I think it is very hard of her not to at least give you a script for a week to allow you to cope with your conference and also to get a script from Dr B.

Thank goodness that Dr B will be available to you, unfortunately just not when you need him.... also it's a bit inconvenient to say the least that the weekend is coming up.

I wonder is it possible that Dr B would prescribe enough that you would have a small 'stash' to fall back on so that you are never left again in the position of not having the med that works best.

Thanks, PB. I've calmed down a bit (went and had a hair cut to be ready for the trip- always nice to have someone massage your head), but am still amazed that she would do that.

It's not like I've been directing her - Dr B was. She has it in writing from him what to try. She said two things that make me think she believes I'm using her and not abusing the drugs. That concerns me. So, because things don't work and you try additional ones it means your abusing them? Um, no. Besides, I am the one who keeps saying, "Let's only try one to two week's worth in case it doesn't work."

I realized I have quite a bit of methadone left from before. While I'll have to increase my dose to make it work up to 25 mg per day, at least I have something to take until I can get the script from him.

As far as I'm concerned, I don't have a PCP anymore because I don't ever want to see her again!

Beth, that is the worst part. I contacted at least 10-15 doctors before I found her. I think being in a big city has its drawbacks. Everyone thinks you're in it for the high. My prior doctor, who was wonderful, is out in the farmlands - a 60 mile trip. I no longer own a car, so it's just about impossible to get there now. When I wanted to switch from my wonderful doc to any doc in the city, I was amazed at how many doctors wouldn't even talk to me. I'd call the nurses ahead of time and they'd tell me that the doctor wouldn't take me as a patient because he/she wouldn't write scripts for opioids.

This is so inherently wrong. I didn't ask for this and I don't even LIKE this class of drugs. I hate the way they make me feel (from lack of libido, to tired, to headaches to backed up plumbing...the list goes on), yet I'm stuck with them until someone makes a breakthrough and I'm treated like I'm...

Oops. Rant started again without my consent, lol. Stopping rant.

Knowing I can use the methadone for a few days helped a LOT. If I hadn't had that, I really would be freaking out. Normally, as PB suggested, I'd have a stash of extra. But, since we were just figuring out what works and just found one that does, I haven't had a chance to build up one.

I also have another rant about dosages required to keep this under control....but that has to wait.

bless you , something will work out, your stunning attitude has to help fix all wrongs! Can you get a car, or are you done with driving? Can you move back out of the city?

Of course you may find a doctor in the city who will treat you like a human being, that's always possible; one may just fall into your lap.

I bet I know how you felt when you remembered the methadone; I had a similar experience, being totally non-functional and verging on insane for almost 3 days before I remembered a parmipexole refill, it's a life-sucking drug but at least it kept me quiet until the neruo could get back to me. Maybe Dr. B will give you some extra of the stuff that works, when he gets back, to help ensure this never happens again. Oh if only I ran the world !!

ViewsAskew wrote:Worried about her license, she says. Not worried about me, but her license.

I'm sure she is most worried about herself and insurance and lawsuits should something bad happen while you are trying so many different drugs, but remember, she also has other patients she is helping who don't have a largely untreatable condition and don't want her to suddenly lose her license

Dear Views Askew,
You know, this whole thing with the insurance companies and the war on drugs and docs not being able to prescribe what is actually a perfectly stable sort of medication really drives me right up the wall. I feel for you, Views Askew, and I was SO relieved when I got to the part in this thread where you remembered your Methadone. I was going to tell you to call your doc's superior and complain, which probably wouldn't have done any good at all, even if you could have gotten thru via phone. And the very idea that your doc's parting shot was she wouldn't at least give you a week's worth, well, that was truly the worst kind of cruelty...that was SAVAGE.

I just keep thinking about a couple things on how bad RLS can get. When I first got it, I didn't know what it was, thought it was because I sprained my ankle, and just lived with it for six months. Talk about practically going nuts! Legs were SO painful, couldn't get comfortable, couldn't sleep well, I was a nervous wreck. By the time I crawled into my family doc's office, I was ready to blow up the world. And then there was this one pitiful story where a wife wrote to us and said she wanted to know more about this RLS stuff on account of her husband. It turns out he could not get proper treatment and thus he went around the bend and lost his mind and wound up in a mental institution. And so she wrote to us. Soooooo sad.

And ALL of us who are on some sort of "dangerous drug" that is Schedule 12.5 on the Reichter Scale, we are forever plagued with the running-out scenario. Just before the Democrats won the election, with the economy going down the tubes and two wars going on and why didn't we go green when Pres Carter said to do it thirty years ago, I was picturing our country returning to the 18th century and not having grocery stores and electricity, and started making plans to get off the grid, and wondered what might I do about my medicines! I actually considered getting SOMEthing online that would work before it all ended, and building me up a giant stash... Tramadol comes to mind. Maybe I'll do a little more studying on the subject, after hearing about our esteemed forum personage and meeting attendee getting discarded so disrespectfully.

Anyhow, my neurologist gives me my leg medicine and my back medicine. And do you know, here I am on this extremely mild Tylenol-Codeine #3, when I ought to be on something a lot more out there, and I had been on the same dose for FOUR YEARS, and I finally asked, "Please, sir, can I have more soup?" and he actually hesitated, saying I was getting "close to the limit" or something like that, and tho he gives me my up in dose, when I came home and did the research on the amount of the codeine part I'm getting (going from 3 pills a day to 4 pills a day), that I still had about five times as much to go until I reached any sort of limit. Gee whiz. The only way I could let it all go was to figure he was worried about how much Acetomenophen my liver could handle. But I was so frustrated with that attitude, feeling like a drug fiend.

Well, I'm here to say to anybody who will listen, I am NOT a criminal. I mean, this whole thing reminds me of when docs were afraid to give terminal cancer patients addictive drugs. Thank heavens for Hospice and their work on the issue. WHO CARES if you get addicted if you're gonna die before school is out!?

The literature is clear, everywhere and everything I've read of recent note says these opiate drugs are safe to give and SHOULD be given, because nobody should have to suffer with some of the really awful pain that out of nowhere folks gotta deal with. I know, I know, Oxys are delivering a lot of folks to rehab. But, I mean, what has somebody got to do to get help FOR REAL? I remember one time I was going to run over my foot with my car, so I could get what I needed. Husband said that was decidedly not something I was allowed to do. Good thing, otherwise I'd be minus my foot. But as we all know and have said, we'd just as soon not have our legs if they're gonna do what they do.

And I just gotta say this other thing, concerning my busted-up back. It was tore to pieces in a bad wreck, riding in a car in the mountains that literally flew down a ravine and crashed at the bottom, right out of Rescue Squad where they had to climb down there and get us, spent two months in the hospital, wore a full body brace for six more months after that, and so on. So, many years go by, and while it bothered me a couple times a month for my whole life, I didn't take no drugs nor see no docs. So, when it finally got to HURTING so bad that I couldn't get out of my bed in the mornings no more, I go to an orthopedist, and do you know I had a PROBLEM getting treatment? My spine pictures look like a hairpin curve in a dynamited road, it even shook up one of my regular docs. So, I happened to visit my psychiatrist the same morning, and just cried and cried and cried. So, she asked if I had tried Lyrica. That stuff, the very NEXT DAY, I got out of bed and my back didn't hurt no more. I been seeing her for ten years, so I guess she KNOWS I ain't no addict.

Views, all I can say is, could be Dr. B can recommend a doc that is sympathetic. Or you might try a group of neurologists, pick some younger guys, forgetabout the phone call, just go in. Give them Dr. B's stuff (precontact him, of course, have him send orders to whomever you make appointment with, just like before). And you can get a referral to a neuro if you need it for insurance by going to the county health department as a walk-in and see a physician same day, and tell him you need to see a neuro. In this manner, you also have an instant general doc at the clinic.

Well, I would say I could write a book on the subject, but I already have, and I apologize to the group for my excessive verbage. And I think Zach said it all, really, when he put, "I have no words for this..." Right on, kid.
GG

My experience with stopping oxy this week, reminded me of augmentation. leggo, I'm wondering if you need to get off the all opioids, and reset the receptors ? Dilaudid is heavy duty. That and oxy are the ones the addicts love, and I am not saying you are an addict, far from it. You are just like the rest of us, trying to find something that works. How come the methadone didn't work ? Or was it side effects? I realize that if you do take a drug vacation, it will be he'll until you get through it. This might not be a good time in your life to do so.I am headed to a sleep specialist as soon as I get an appt. reccomended by the foundation.

ViewsAskew wrote:I guess I've been lucky - my PCP has been an unwilling participant in the opioid prescription business for 3 years.

Your dry sense of humor kills me!

So sorry you had to go through this. The medical establishment can be sooo condescending and patronizing.

I fired a PCP awhile ago bc she would only rx 10 norco. When I asked for a refill 6 weeks later, she gave me 5 and didn't even discuss her decision...I found out at the pharmacy.

I wish I were better at the humor more often, lol. I get too serious at times....likely caused by RLS. Seems to cause all my other problems, might as well blame it on that.

They can be so condescending. When this happened, I wanted to hurt this woman. Your PCP sounds lovely, too. I get that there is a "war on drugs" (which I cannot write with a straight face). Instead of doing things that matter, docs do crap such as this. Yeesh.

Oh yeah I was livid at her for that. Doesn't a refill usially mean the same amount?! Glad to be done with her.

She would only rx 10 ativan too. I tried to get 30 out of someone else at her practice hoping they'd be more reasonable...it would last me 3 or 6 mos for crissakes. Nope. 'She gave u 10 so I am giving u 10.' I left the whole practice.